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Spoons! Support for those with chronic pain & fatiguing illnesses

(932 Posts)
Grockle Wed 03-Apr-13 13:48:24
HandDivedRaspberries Sat 27-Apr-13 13:28:50

I have a cleaner one hour a week, initially paid for with DLA, and she's transformed my life.

She sanitises kitchen and bathroom, changes the bed, vacuums or mops maybe two rooms each week, puts out rubbish and then does odd jobs like accessing a high cupboard, or moving something heavy (even just getting the vacuum cleaner upstairs).

It's definitely most efficient and least effort for me when she does regular jobs though, as she knows what she's doing and where the materials are, and just gets on with it. So even though I could now do some of "her" jobs, I leave them to her and save my spoons for more complicated stuff.

Grockle Sat 27-Apr-13 20:12:28

Thanks for the suggestions - I had hoover/ mop floors so it seems like that is something a lot of us struggle with.

Building - it wasn't all that helpful. New dr put me on old meds. Will have follow-up appointment in a couple of weeks. Will see what happens. I have rheumatologist on Monday so am hoping something helpful comes of that.

belleshell Sat 27-Apr-13 21:40:14

Skirting boards......... i have some odc with them but cant do it...

Im very sombre today the big crash on M62 is very local to us, and its so sad for the families of the poor girl that died and those injured!!! then here is me moaning cos im tired!!

Grockle Sat 27-Apr-13 21:56:50

Belle - the crash is awful. I spent many hours on the M62 when I lived up there

Gallifrey, I have wheelchair envy! Your quickie - can you propel yourself in it, even when you don't feel brilliant? I love them & would happily save up forever to get one if it mean I could get out & about easily.

My list of things I'd like the cleaner to tackle now includes:

Hoovering
Mopping floors
Polishing
Bathroom/ loo
Cobwebs
Skirting boards
Light switches
Window Sills & blinds

awaynboilyurheid Sat 27-Apr-13 22:12:32

Thanks Grockle and needs yes thats whats happening at the mo loads of tests all normal which is great but no answer to this exhaustion finding it quite scary at the moment at how quickly I am tired out by minor things and if I do something frightened off what feels like the rebound effect a day or two later when I am zapped keep thinking will this cause zapped feeling if I go to shops or try to do housework, just all strange to me who usually has 10 things done by 9 am, and getting me down tbh but thanks will take advice and will go back to GP

new to this thread but belleshell yes the crash is really terrible but you are not moaning cos you a wee bit tired you have an illness and that is surely what this forum is for

gallifrey Sun 28-Apr-13 10:04:24

Grockle I can propel myself easily in it if we are inside like in a supermarket, shopping centre etc with nice shiny floors. I can't easily wheel myself on pavements or carpet. But just for a nice mooch around the shops it's fab.

belleshell Sun 28-Apr-13 18:11:00

Away... most of us had done 10 things before 9 am in the past... its an awful thing to suddenly not be able... so stick with us and we wil see you throu!! (Hug)

Im wondering if i should discuss reducing hours at my one to one meeting this week...as much as i would like 24 hours im not sure id be allowed but did wonder about 27 hours 4 day s one week 5 the next... i am sooooooooo struggling with 5 days a week, by wednesday im buggered and in bed at ungodly hours (ie 5pm)

How as everyone got on this weekend.. Is AB about wondered how job hunting is going..

spoons to you all for the coming week xxxx

Grockle Sun 28-Apr-13 21:13:36

I could not do 5 days. 4 Is hard enough.

DP just texted to say he loves me. WTF am I meant to do with that? Why tell me? I'm furious angry

I have rheumatologist appt tomorrow. I have written a list of current problems, including the fact that now I am have been suicidal. I guess the good thing is that I am too tired to act on those feelings.

fuzzpig Mon 29-Apr-13 07:22:33

I'm finding 4 days too much even though each shift is now only 4 hours! This weekend has done me in - poor DCs were totally stir crazy yesterday as DH was at work and I just couldn't face going outside. Today I have to take DS to SaLT group and then to nursery, and then go to work until 7. I am really glad DH has a job of sorts, and is on a useful training course too, it means there is no let up as on my days off I have to do all the school runs etc. I know that sounds really selfish as loads of people have to do it all anyway. I am just not good at the mum stuff really. In a way, being at work is easier.

Grockle, are you two still 'together' or are you officially split? Sounds like it is time for an ultimatum - if you want him back at all that is. He can't keep running away (literally!) from his responsibilities. Good luck for your appointment today.

fuzzpig Mon 29-Apr-13 07:26:21

Sorry that was meant to but it means there is no let up... editing fail

magso Mon 29-Apr-13 11:30:54

Oh Grockle love, you are having a difficult time. (hug) Hope your appointment is helpful.
Belles its a good idea to discuss reduced hours - at least test the water.

I had a tiring week last week followed by DH going away. Ds report and statement paperwork arrived at the week end and I have still not sat down properly to read it - just dipped in and out - always an upsetting read. Then I damaged the car, (the third time I have knocked the front corner of our newish car against our gatepost since we had it) whilst ds is in meltdown! I am so busy consentrating on reversing out safely over the distracting din- that I forget the front still has to clear the post. Ds did not notice. Gate post is still there! Car is scratched and dented again!
I took ds out but he had not eaten his lunch properly and can be most challenging when hungry and frankly I struggled. Then today we missed the school bus (it must have been earlier than usual) so I had to take him to school (9miles away) through horrendous traffic. We live in a village in a the triangle between 2 major motorways and both were in trouble this morning. Got back at 10.30 shattered. So I feel like a total failure and I still have to face DH.

Gallifrey Mon 29-Apr-13 12:03:09

sending lots of love and spoons to everyone today!

I was thinking yesterday about how unfair these illnesses are (CFS, Fibromyalgia, ME) etc It's like I'm too "disabled" to have a normal life, go out all day with my children or have a proper job, go for walks in the countryside that sort of thing. But on the other hand I'm not "disabled" enough to actually get any help or support from anyone. Does anyone else feel like this?
I'm fed up with having to fight for everything, and feeling so exhausted all the time and yet nobody really understands what it's like.
It can't be right that when I do the hoovering it makes me cry, I can't bend down to pick stuff up but keep dropping things all the time so I have to bend down and that makes me cry too. I feel so isolated because my friends have all buggered off because it's obviously too much hassle to come and see me.
My daughter wants to go to Thorpe Park for her birthday and I know I won't be able to walk round there all day, but if I go in my wheelchair I won't be able to go on any rides with her.
I can't take my 2 yr old dd out anywhere because she runs away and I can't run after her.

Can you tell I'm really bloody pissed off with this? I would rather be more disabled then at least I could get proper help sad

magso Mon 29-Apr-13 16:09:58

Gallifrey I totally agree. Its more that some chronic illnesses ( like ME) are not recognised for the level of debility they cause. I think to that the fact that there is such a range of debility and no clear disease prognosis is confusing.
I have not solved the theme park one other than to have a second adult. The not being able to run after children is a real problem.

Grockle Mon 29-Apr-13 21:12:56

Oh Magso, you have lots going on. flowers

Gallifrey, I could have written your post sad It's crap, isn't it? My appointment was pointless. Dr said to reduce amitryptiline because that might be causing the fatigue. I told him I had the crippling fatigue long before I started on amirtiptyline but he was sure I was wrong. Then he said he doesn't have a magic cure & there's no need to see me again.

So now I'm left with lots of questions - will it get better? Worse? How do I deal with longterm pain? And fatigue? I'm tempted to write to him to ask.

I'm not 'together' with DP. I should call him exP. He texted me today (he never texts me any more) to say 'fucking shitty day' hmm I haven't responded. He promised to call me tonight but he hasn't.

magso Tue 30-Apr-13 08:18:50

Sorry rheumy was not more helpful Grockle. My cardiologist blamed my newest asthma puffer for my tachicardia but the tachicardia preceeded my new puffer by at least 3 years. I wonder if it is worth writing toyour Rheumy consultant and asking the questions, but knowing he may not be able to give you specific answers. I have read that SLE usually improves in middle life. Its complicated when several chronic conditions (and their treatments) coexist.

fuzzpig Tue 30-Apr-13 09:17:04

I share the worry about running after bolting children. Yesterday I was getting ready to go out with DS to hospital but made the mistake of not shutting the door properly after checking how warm it was. He escaped and ran about 50m before I caught him! Thankfully we live on a quiet cul de sac. I was so annoyed though and my new phone fell out of my pocket and got damaged. Straw that broke the camel's back, I cried before pulling myself together and going back out to get the bus. sad The CFS definitely stops me doing stuff with DS (or particularly both DCs together) because he's not quite 'well behaved'. DD is fine, I can take her to places like the cinema knowing she won't run off.

fuzzpig Tue 30-Apr-13 09:19:10

I've been trying to think of things I can do on weekends with the DCs if DH is working. Most people can just go to the park but I just can't get that far, let alone managing to watch them while they play and then walking home again!

I wish I'd learned to drive when I was younger and healthier. I don't feel like there's a chance in hell of me learning now or being able to afford it.

gallifrey Tue 30-Apr-13 10:16:23

fuzzpig I have an electric wheelchair and when my dd was smaller she would stand on the back of it and we could go to the park and to loads of places. If I didn't have that I would have been practically housebound and not even able to take her to school.
She was always (and still is) very well behaved, but my 2 yr old dd is just so naughty, I tried going to Bluewater with my power chair and have her sitting on my lap and she sat for about a minute then wriggled off and ran away. I then put reins on her and she still tried to run off then when she realised she couldn't she just layed down on the floor. It was such a nightmare I didn't even look round a single shop and just came home!

Solo Tue 30-Apr-13 11:08:07

Am exhausted! work is very hard every day. Have absolutely no choice though.

Hope you are all ok. I'm sorry for not being able to read through your posts, but I really don't have the time or energy for it. I'm trying to keep touching base with you all though.

Wishing you all extra spoons.xx

gallifrey Tue 30-Apr-13 11:42:10

and wishing you extra spoons too Solo xx

NeedsTherapy Tue 30-Apr-13 12:57:57

Feling like a crap parent today. dd2 has a pooey nappy and dd1 is sat on the potty. i just dont have the energy to deal with either of them right now sad I need to sort out the potty before dd1 get up and wonders off leaving dd2 playing in the wee!

I drove to hobbycraft this morning (about 45 minute drive away) walked round then came home and I'm exausted. The exaustion is because yesterday afternoon I went to see my Psychotherapist who is an hour drive away.

Its so stupid when I dont see her I dont cope very well, but when I do go and see her I'm always bad the next day and now because I decided I was just going to get on with things I'm going to be bad tomorrow too.

Dh is away till saturday (another reason I'm worse than usual, he was also away last week) and I really could just cry right now.

gallifrey Tue 30-Apr-13 13:03:06

I didn't used to mind when my DH was away overnight, in fact I liked it because we could have a lazy dinner and then relax all evening. Now the thought of cooking and having to wash up afterwards makes me feel like crying with exhaustion.

NeedsTherapy Tue 30-Apr-13 13:10:05

just found some energy to change the nappy and clean the potty, then dd2 yawned and dd1 said 'I'm really tired'. Small miracles, both girls now in bed having a nap and I sit and (hopefully) fall asleep.

I used to enjoy it when dh was away, it was a chance for me to catch up on tv, do some craft projects etc, now I struggle to cope. No room is tidy, housework just doesnt get done and by friday evening when dh gets home I'm at the end. I have 2 days to recover before it all starts again sad. We moved house to be closer to family support, but it also means he is working away more and more often.

buildingmycorestrength Tue 30-Apr-13 13:12:42

Needs hobbycraft totally did me in a couple of weeks ago. It is deceptive because it feels like so little effort but in fact it is walking, standing up, etc. And time gets away from you because you are enjoying yourself. sad

I actually need to go shopping because the underwire has poked through my bras blush and I was sort of looking forward to it until I realised that really I can't go 'shopping' as such. If I want to try a few things I should order them online. Urgh. Might manage a bra fitting but not a mooch round afterwards as well.

fuzzpig Tue 30-Apr-13 14:13:18

Shopping does me in too now. I have never been into clothes shopping but I do like mooching around, especially when it's getting close to Xmas or DCs' birthdays as I love finding presents for them (even if I then get most of it online, apart from trying to support a local independent store), but I now have to ration my trips.

Needs, I really sympathise with the potty/nappy thing, it is so hard juggling the needs of two little ones. I would have loved more DCs but I just can't go through all that again. I know I am lucky to have a DS and a DD already of course, so I just try and remind myself that there are advantages to them being more independent. Remember this phase WILL pass!

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